What is Biliary Atresia?
Biliary Atresia is a very rare liver disease where the bile ducts from the liver are blocked. It is estimated that one in every 10,000- 20,000 live births are born with the disease. In addition to the large bile ducts being blocked, the disease begins to spread to smaller bile ducts. This means bile can't drain from the liver properly. If left untreated, the liver becomes scarred and loses it's function. Treatment is needed as soon as possible. After testing to be sure the disease is in fact Biliary Atresia, a surgery called the Kasai procedure is done in order to regain bile flow. This allows bile to flow, however it can't reverse the scarring of the liver. Often times a liver transplant is needed down the line.
What are the symptoms of Biliary Atresia?
- Yellowing of the baby's skin
- Yellow eye whites
- Dark Urine
- Pale, white or clay colored stools.
If a child is diagnosed with the disease, there are many places to get support.
- My first suggestion is to READ, READ, READ. This is the reason I wrote Angel Donor. It is for our brave kids battling this disease. Parents and caregivers, be sure to read about the disease. There are many articles out there. Ask your child's doctors for their favorite resources and books about the disease.
- Get support online or in person. Ask the hospitals if there are support groups, other parents who are going through this, etc. My two favorite places for online support (which I've also listed in the back of Angel Donor) are: http://www.classkids.org and http://www.liverfamilies.net. The parents and administrators there are full of information and support. It's great to talk with people who know exactly what you are going through.
- If you feel the need, you can set up a secure, special web page to share updates with the family. The last thing you will be thinking of during a hospital stay is calling all the family members and repeating the update on your little one a hundred times. Once you get a private moment to yourself, you can update the page and everyone will be in the loop. One great website is http://www.caringbridge.org . It is secure, so only people you give the direct link to can access the page.
If you have found this post in your search for answers about this disease, I hope that I have helped you some. Feel free to comment here anytime. I would love to help in anyway I can.
